Alzheimer’s disease and Down Syndrome?

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My first recollection of hearing the two phrases side by side was during a visit to the Anschutz Medical Campus, in Aurora, Colorado in 2015. Some nice folks had obtained permission for me to visit with Huntington Potter, PhD., the Director of the Rocky Mountain Alzheimer’s Disease Center.

I won’t try to elaborate here, but will post this to put a bug in your ear, if you’re interested, in why many neuroscientists seem to speak of some kind of connection. Here is a link to the NIH website. https://www.nia.nih.gov/health/alzheimers-disease-people-down-syndrome

Here is a link to the Alzheimer’s Association https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/down-syndrome

Here is a link to where I met Mr. Potter.

http://www.ucdenver.edu/academics/colleges/medicalschool/departments/neurology/Faculty/Pages/potter.aspx

Colorado team working on a cure for Alzheimer’s

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https://kdvr.com/2018/06/27/colorado-team-working-on-treatment-for-alzheimers-disease/amp/?__twitter_impression=true

Dr. Potter says that on a scale of 1 to 10, with 10 being the highest excitement level, he is at 7 at this point.

Will people with Down syndrome unlock the mystery of Alzheimer’s disease?

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Michael Clayburgh has a long family history of Alzheimer’s and his grandfather died from the disease.

Clayburgh is now on the front lines of unraveling the causes of the disease that has so devastated his family because of a condition he carries — Down syndrome

The paragraph above came from the article the link below will take you too

https://goodmorningamerica.com/wellness/story/people-syndrome-unlock-mystery-alzheimers-disease-55942847?cid=social_fb_gma

the NIH and Down syndrome

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This legislation provides NIH with the opportunity to not only expand its current efforts on Down syndrome and commonly co-occurring conditions in individuals with Down syndrome that are also seen in the general population, such as Alzheimer’s disease/dementia, autism, cataracts, celiac disease, congenital heart disease, diabetes, and immune system . . . . .

The above portion of a paragraph come from the NIH article the link below will take you to.

https://www.nih.gov/include-project/include-project-research-plan

I asked myself this the other day . . . . .

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Like many nights, night before last something woke me, not sure what, but a question came to mind. What is my best advice to a new caregiver?

Ian Kremer posted this a few hours ago, it’s a graphic, does the work of a lot of words.

My best advice for a caregiver, yep, get mentally tough.

Scientists- Alzheimer’s- Beth Stevens

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you’ve seen one caregiver, you’ve seen one caregiver #ENDALZ

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Many times the quote has been said . . . “If you’ve seen one alzheimer’s patient, you’ve seen one alzheimer’s patient.”

Is it the same for caregivers? Of course it is. Circumstances of all kinds exist.

For me, I’m thinking, this will be a “work in progress” event.

Up to now, it’s going well.

appreciating the National Institute of Health

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Trying to learn more took me to the NIH Categorical Spending page this afternoon. It’s setup by disease in alphabetical order.

Just looking at the amount of disease names left me in awe of the responsibility they have.

Here’s a link to the page I was studying . . . . .

https://report.nih.gov/categorical_spending.aspx

a new direction for me personally

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Throwing the Starfish back in the water, to me, is a metaphor for helping 24/7 caregivers that have no family or friends that can help, and no money to pay for it.

Folks that are out raising awareness told me of a memory cafe and an alzheimer’s outreach center that are helping a lot of folks.

Some of my time will be used finding resources for caregivers, that may need help, and sharing it with them. Time will be spent also learning how to find those caregivers that may have a need for the information.

The link below will take you to the “Starfish Story,” on this blog.

https://jackfussellacrosstheland.wordpress.com/2017/11/05/the-little-girl-and-the-starfish/

the flow of money needs to remain steady #ENDALZ

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There has been speculation that some lawmakers may not want to increase funding for finding cures and treatments because they don’t see enough good things, at the moment, coming from science. If that is the case, I don’t think they understand how it works.

If you give someone an hour to do four hours worth of work, and then you’re disappointed they did not finish, you may have a thinking problem. The money from Congress is never steady enough, it’s so piecemealed. Institutional knowledge is lost all over the country, scientist are going to other jobs.

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